Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs
Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs)Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal date…
Ronny’s weekly update 20-26 January 2025
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group an oldie but…
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
Neuroendocrine Cancer – my liver surgery
From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place…
Ronny Allan – Every picture tells a story
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the…
Neuroendocrine Cancer – If you can see it, you can detect it!
Updated December 2025BackgroundScanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and…
Piss off cancer – 14 years of Christmas!
14 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas day activities including my first Christmas after diagnosis and major surgery in 2010. I remember the whole of my own family attended, my son and daughter's families and 3 grandsons (I now have 4 💜). In fact I helped celebrate my eldest Grandson's 21st birthday on 3rd Jan 2025, he was only 6 when I was diagnosed. I also enjoyed celebrating Chris's 70th birthday on 11th December 2024, something perhaps I do not expect to do back in 2010. The main thing I remember…
A review of 2024 from Ronny Allan
ReviewBlog. It was a funny old year in 2024. New challenges prevented me from exploiting the increase in followers and views of 2022/2023 following the slight slump during the pandemic, coupled with the introduction of new Facebook algorithms which treated non-profits such as myself as businesses (clearly a tactic to increase advertising revenue). Personal challenges included some strange symptoms which I self diagnose as Hives (urticaria) for the first 6 months and the last two months of 2024. This led to me to write two posts (Histamine The NET Effect and Hives (Urticaria) The NET EffectI still managed to push…
A review of December 2024 from Ronny Allan
From Ronny Allan. Here is the monthly summary of December 2024 on RonnyAllan.NET A quiet month due to holiday and grateful for those who continued to read and share my articles while I was absent. I wish I could do more but there's just little old me! And Chris too of course for those following my exploits on Facebook Page Ronny Allan. Fortunately I have a great 2IC and admin team in my private group, so that runs as normal. Firstly, I'll list the top 10 performing blog posts in December, I can assure you there is some great information in…
A Christmas 2024 message from Ronny
Background to 2024 I've only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter (X), Facebook, Newsletter or direct from a subscription to my website. All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2024 total of over 285,000 blog hits (so far), a figure higher than 2023. I've had a lot of personal issues to deal with in 2024, including some strange health stuff, so I'm delighted this…
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years
Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in…
RonnyAllan.NET – A Review of November 2024
Here is the monthly summary of November 2024 on RonnyAllan.NETI paid little attention to 10th Nov awareness (I do enough on the other 364 days!) plus it is a personal time for me with surgery cancerversaries etc. The top post this month was totally unexpected as it was an update of quite an old entry on my website - just goes to show that some studies go on for many years! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of…
18 days in November 2010 – by Ronny Allan
I'm publishing this 14 years to the day I walked out of hospital holding the hand of my wife Chris.After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me. Some were on the critical path and had to be sequenced. Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery. People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs i.e. advanced…
Ronny Allan’s roundup week ending 24th November 2024
New or Republished Blog Posts this week https://ronnyallan.net/2024/11/24/in-the-war-on-neuroendocrine-cancer-lets-not-forget-to-win-the-battle-for-better-quality-of-life/https://ronnyallan.net/2024/11/23/carcinoid-whats-in-a-name/https://ronnyallan.net/2024/11/21/running-in-the-family-multiple-endocrine-neoplasia-men/https://ronnyallan.net/2024/11/14/update-oncolytic-virus-trials-for-neuroendocrine-cancer/Twitter, X and BlueskyTwitter became X and still called twitter but Bluesky is a new kid on the block, works like twitter/X. You can get me on Bluesky by clicking here (clearly you also need a Bluesky account).https://bsky.app/profile/ronnyallan.bsky.socialFacebook - Neuroendocrine Cancer (the original)This is my main page posting blogs and other NET stuff. Click here to browse the page and follow or like please if you've not already done so. Feed below too.Facebook - World Neuroendocrine Cancer Day (the original)This is my other page posting blogs and other NET stuff but mainly focussed on…
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
Update – Oncolytic Virus Trials for Neuroendocrine Cancer
Updated 28th May 2025 What exactly are Oncolytic Viruses? Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs,…
A Review of October 2024 on RonnyAllan.NET
Here is the monthly summary of October 2024 on RonnyAllan.NET Awareness helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the post graphic to read it. I wish I could do more but there's just little old me! And Chris too of course for those following my exploits on Facebook Page Ronny Allan. Fortunatey I have a great 2IC and admin team in my private group, so that runs as…
Things to do today
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…
Targeted Alpha-emitter Therapy (TAT) – the wave of the future in nuclear oncology/PRRT?
What is Targeted Alpha-emitter Therapy?Regular PRRT which is authorised for use now, i.e. Lutathera/Lu177 is a beta therapy. Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles to…
5 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)
Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrased, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right? Wrong, the cancer story is changing. Sure, many people do die of cancer, and that's heartbreakingly sad. But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…
Ronny Allan’s Weekly roundup – 7th to 13th October 2024
Weekly roundup 7th - 13th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/11/5-blog-posts-worth-reading/ https://ronnyallan.net/2024/10/10/did-you-mean-to-lose-weight/ https://ronnyallan.net/2024/10/09/neuroendocrine-cancer-liver-directed-therapy/ https://ronnyallan.net/2024/10/07/ronny-allan-weekly-roundup-30th-september-6th-october-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
5 blog posts worth reading
Just click on the pictues and read (and hopefully share!) Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy…
Neuroendocrine Cancer – Liver directed therapy
October 2024. Updated to include Drug-Eluting Beads TACENeuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs).Spread to the liver may…
Ronny Allan – weekly roundup 30th September – 6th October 2024
Weekly roundup 30th - 6th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/05/ronny-allan-feedback-recommendations-and-reviews/ https://ronnyallan.net/2024/10/04/ronny-allan-background-to-my-diagnosis-and-treatment/ https://ronnyallan.net/2024/10/03/neuroendocrine-neoplasms-high-grade/ https://ronnyallan.net/2024/09/30/a-review-of-september-2024-on-ronnyallan-net/ https://ronnyallan.net/2024/09/30/ronny-allans-weekly-roundup-23rd-29th-september-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…
Ronny Allan – Feedback, Recommendations and Reviews
I'm so proud to receive many reviews from many healthcare and cancer organisations. The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations. "Proud to have worked on this project with some marvellous people including Ronny Allan" Kay WesleyCEO "Internationally known Neuroendocrine Cancer Patient Leader - Ronny Allan is certainly making his mark on the online health community" "Ronny Allan is dedicated to making a difference! And that makes him MORE than the challenges he faces!" Previous Next Dr Mark Lewis Dr Eric Liu Dr Julie Hallet Dr…
Ronny Allan – Background to my Diagnosis and Treatment
Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control). This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score. It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia. After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…
A Review of September 2024 on RonnyAllan.NET
Here is the monthly summary of September 2024 on RonnyAllan.NET The top post this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the post graphic to read it. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was away for some of…
Ronny Allan’s weekly roundup – 23rd – 29th September 2024
Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
F*** you cancer, I’m still here!
On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking…
Sometimes you gotta climb that hill, even if you don’t want to
When I was diagnosed, I was very compliant with my doctors and nurses. Whatever test they wanted, I'd cooperate. Whatever hurdle they wanted me to jump over, I would jump. I always had questions though, I find an inquisitive mind helps with coping. That's not to say I enjoyed each experience but what I knew it was required to move onwards to the next step - everything was on the critical path. In particular, the liver biopsy was a challenge but totally necessary to get to the diagnosis which would then dictate treatment and prognosis. Surgery for Stage IV small intestine…
Weekly Roundup from Ronny Allan – 16th – 22nd September 2024
Weekly roundup 16th - 22nd September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance https://ronnyallan.net/2024/09/21/weekly-roundup-9th-15th-september-2024/ https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2024/09/19/childhood-cancer-awareness-month-neuroendocrine-cancer-featuring-elizabeths-story/ https://ronnyallan.net/2024/09/19/the-trouble-with-the-net-it-can-spread-false-hope/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…
Weekly Roundup 9th – 15th September 2024
Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
CABOMETYX® (cabozantinib) for pNET and epNET
18th October 2025. Exelixis Announces Results from Subgroup Analysis of CABINET Phase 3 Pivotal Trial Evaluating CABOMETYX® (cabozantinib) in Advanced Lung and Thymic Neuroendocrine Tumors at ESMO 2025 | Exelixis, Inc. – CABOMETYX reduced the risk of disease progression or death by 81% versus placebo in patients with advanced lung or thymic neuroendocrine tumors (NET) – – The lungs are the second most common NET site of origin, yet limited treatment options are available Read announcement from Exelixis here. 23rd September 2025. UK MHRA grants marketing authorization Ipsen (Euronext: IPN) announced today that UK MHRA has granted marketing authorization for cabozantinib…
Weekly round-up 2nd – 8th September 2024
Weekly round-up (2nd - 8th September 2024) News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…
Palliative Care – it might just save your life
When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
A Review of August 2024 on RonnyAllan.NET
Here is the monthly summary of what we all achieved in August 2024. Something new, something blue and some borrowed too! The main headline is the announcment that my private facebook group now has 10,000 members. This is further evidence that our cancer is not rare. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. August was another 25,000 blog views towards a projected annual increase over 2023. I wish I could do even more but there's just little old me! And…
CAR-T clinical trials for Neuroendocrine Cancer
Updated 4th June 2025Chimeric Therapeutics (ASX: CHM) has received fast-track designation from the US Food and Drug Administration (FDA) for lead candidate CHM CDH17 to treat gastroenteropancreatic neuroendocrine tumours (GEP-NETs).The FDA based its designation on the drug’s potential to improve outcomes for patients who have progressed beyond at least one prior line of therapy in the advanced or metastatic setting.What does fast-track mean? It will create a faster development pathway for CHM CDH17, giving Chimeric access to more frequent meetings with the FDA to discuss the drug’s development plan and eligibility for accelerated approval.Read more hereUpdated 31st August 2024 to provide…
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?
Updated 25th August 2024 to add data on scenarios of liver and peritoneal metastases, plus a review of the Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. It also incudes links to the European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumoursSmall Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease. …
2024 Update from Ronny Allan: Reassuringly stable!
In every surveillance session I’ve had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable! In 2023, I was given the headline of "No evidence…
I can see my invisible illness
As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do. It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I'm living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it's not a flush! No pity…
14 years since diagnosis, I’m still here
I finally made 14 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris, my wife of 49 years.I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and…
Neuroendocrine Cancer: Glossary of Terms
Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this database:1. If your term begins with an A, click on A to find all terms beginning with A. Select your terms beginning with A from the filtered list.2. For numerical terms (e.g. 5HIAA etc), please click on the hashtag (#) symbol in the A-to-Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as…
A Review of July 2024 on RonnyAllan.NET
Here is the monthly summary of what we all achieved in July 2024. Something new, something blue and some borrowed too! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I was literally on holiday for the enture month of July but still managed over 25,000 blog views. I wish I could do more but there's just little old me! And Chris too of…
Lanreotide for Lung NETs – SPINET Clinical Trial
Reviewed and updated 30th July 2024. Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse. Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
I’m not sick, I just have cancer
Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…
Neuroendocrine Cancer: The Perfect Storm
The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UKAs featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for…
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!
I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin. I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine…
Poker Face or Cancer Card?
Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really…